Circadian Rhythm Problems

[karmajinpa]

I have a sleep disorder not yet mentioned. I was diagnosed in 2008, but my symptoms started in2006 when I came down with a coxsackie (sp?) virus that causes vesicles in the mouthand throat in toddlers called herpangina. Anyway, for the past zeveral months I've been see-sawing between getting 2-3 hours of sleep, usually around early morning alternating with hours (longest was 64, but usually 24-48) of overwhelming need for sleep. I have attributed this to severe sleep deprivation. Has anyone else experienced this?

Ihave tried melatonin 3mg, valerian, various compounded sleep aids like SomnaPure, etc. sold on ProHealth.com all without success. I have f.lux on thecomputer, but I use my Kindle HD for mostly because itiseasier inbed. Unfortunately, the comany doesn't make a version for andro

I'm very impressed with the level of discussion and scientific backing in this thread and thank you all for your willingness to share.

 

[EnduringAngel]

I'm so glad someone started this thread as came on here to post the exact same thing.
I was diagnosed with delayed sleep phase syndrome a few years ago, although I know its due to my ME, it has gotten worse and nothing seems to help.
I tried the bright light therapy in morning and melatonin at night, it didn't help.
Now my sleep is so bad Im sleeping 16 hour days, lots of dream sleep, not restorative at all, often sleep shout, and wake up my arms stiff and sore where ive been holding them against my chest, like ive been fitting or something.
The NHS sleep department I went to were useless.
Am sure I have that upper airways resistance Dr T talks about but NHS wont test for it.I do use nosovent thought.
Is there any meds that increase stage four sleep apart from GHB? has anyone experience of using it?
I had tests done via dr myhill (saliva) that show my body produced hardly any cortisol during day and way too much at night. Does anyone else have this?
my body clock would totally revert without meds. I take diphenhydramine now, have cut out the melatonin to see if it helped me be more awake in the morning, it doesn't.I stopped valerian as it doesn't help.
I take low dose steroids 10mg in morning and b12 lozenger (meth) but it doesnt help either.

I tried Chronotherapy on two occassions, both forward and reverse, but it didn't help.

My GP is so cluless and wont refer me to an endo. Although I know my adrenals and thyroid arent right.
I have no more money for private tests. Does anyone know a good NHS UK endo?

I have f.lux on my pc, and try to turn lights out etc. I do everything you are supposed to, but Im getting worse. I have severe ME, and no one but carers to help. I cant take in a lot of what I read, so its hard to research, sorry if I'm asking questions already asked, but am desperate.

Angel x

 

[soxfan]

I don't have a circadian rhythm problem but have extremely poor sleep quality. I dream a lot but my sleep is totally non restoring. It has become worse over the years. I have low melatonin levels at night but it doesn't seem to help and sometimes leaves me feeling even worse in the mornings. I just had a sleep,study done and helpfully I slept long enough for them to see something out of whack. I am lucky to,get 6 hours sleep,a night and it is never all at once. It is broken sleep no matter what I take. I wish I could help you more but just wanted to let you know that I feel for you...

I wake up every morning dreadfully tired and it makes me feel so terrible even before the day has begun. I have also tried at least 10 or more different meds that are suppose to help with deep sleep but they all leave me terribly hungover even at the tinest dose.

 

[Ocean]

I want to update that the glasses are working wonders for me. My bed time has gotten earlier by several hours. I am wearing uv400 glasses. I really recommend trying this method.

 

[Little Bluestem]

What strength of valerian did you take? I started out with 500 mg and it left me zonked in the morning. I now take a sleep combination pill with 200 mg valerian or a herbal sleep tea with 20 or 25 mg valerian without a problem.

I find that ‘layering’ moderate doses of several sleep aids before and at bedtime to be the most helpful. I also have f.lux and blue-blocking glasses and keep the lights low. I take a few of the calming things during the days as well.

 

[GracieJ]

And... here comes the exception to the "rule" posted here!

I tried just about everything anyone could think of to correct years of insomnia and what did turn out to be circadian rhythm disorder.

The doctor had me try lights at 6 am every morning, and it was torture. I eventually had to abandon it.

I've posted here several times now about what I did to fix my sleep, and it worked! I used a combination of several supplements, GABA being my own personal knock-out punch, and went from 30 years of insomnia and poor sleep patterns to sleeping 7 hours a night every night. It was wonderful. I think sleep deprivation is our worst enemy, because it affects so many things we do not realize.

I use a Go-Lite (blue light) when I cannot use the supplements due to expenses, and here's the kicker: I HAVE to have blue light at night to extend my "day" so I can sleep at a normal time. My body clock says my day is "done" about 6 pm. The light in the evening works great. The testing I did was on the now-defunct Apollo site, and it came up as a truncated circadian rhythm. This is the reason the light box did not work for me at all in the morning. So if I were doing the light-blocking described in this thread, I would block blue light in the morning. Part of the instructions, actually, was to wear sunglasses or sleep until at least 9 am with no light allowed in the eyes at all.

If all the above in this thread doesn't work for someone, it's worth taking a look at the variations in circadian rhythm disorders.

Currently, I've been back to a cycle of insomnia, which is just driving me nuts after the previous success the last seven years. There is not enough natural light coming into my new apartment, and I've gotten lax with the light box, for good reason: Blue light is the frequency that aggravates macular degeneration, which runs in my entire family. Not sure what to do with this except to nourish my eyesight and work on other ways to sleep, but sure love my Go-Lite! Works a miracle when I do use it.

 

[Ocean]

For those who use the blue light blocking glasses, when do you put them on? I experimented with putting them on later last night and I ended up sleeping quite a bit later. Prior to that I was putting them on as soon as it got dark out. In winter when it gets dark early, will I have to start wearing them like at 5 pm? That seems really inconvenient.

 

[Beyond]

Well its 6:41 AM as I write this Went too far today! I am gonna try the blue light blocking glasses while I try to get an earthing sheet from UK, casually I bought some years ago one amber glasses that later realised were too gaudy to wear in public. If I had to redefine the word desperate I would choose "that one that will try everything".

 

[EnduringAngel]

Well I woke at 9am sunday took meds, went back to sleep until 2.30pm was awake until 7pm.
Then went to sleep from 7pm to 9am next morning, that's a whole lot of sleeping!

I think all our sleep problems are prob due to HPA axis probs and rubbish adrenals, but I don't know why or what the answer is to fix them!

 

[Beyond]

Yeah at least mine are caused by Hashimoto´s and adrenal fatigue, low all adrenal hormones in various tests and subclinical hypothyroid... So the HPA must be quite screwed It took me a lot to get to this but I have seen other people with low thyroid/hashis and adrenal fatigue that started sleeping more normally when treated. The amber glasses gave me a headache in minutes btw xD

 

[Ocean]

The amber glasses gave me a headache in minutes btw xD

Maybe try Blue Blocker brand? I have a generic version of those and they are working much better for me than the amber ones I got from Amazon.

 

[karmajinpa]

I have a sleep disorder not yet mentioned. I was diagnosed in 2008, but my symptoms started in2006 when I came down with a coxsackie (sp?) virus that causes vesicles in the mouthand throat in toddlers called herpangina. Anyway, for the past zeveral months I've been see-sawing between getting 2-3 hours of sleep, usually around early morning alternating with hours (longest was 64, but usually 24-48) of overwhelming need for sleep. I have attributed this to severe sleep deprivation. Has anyone else experienced this?

Ihave tried melatonin 3mg, valerian, various compounded sleep aids like SomnaPure, etc. sold on ProHealth.com all without success. I have f.lux on thecomputer, but I use my Kindle HD for mostly because itiseasier inbed. Unfortunately, the comany doesn't make a version for andro

I'm very impressed with the level of discussion and scientific backing in this thread and thank you all for your willingness to share.

 

[karmajinpa]

Sorry, I didn't mean to repost my original.
I got a pair of blue light blocking safety glasses on Amazon, checked by the earlier post that showed colors blocked by different lenses to be true blue blocking. They slide down my nose, but stay on properly if I use a soft headband. http://www.amazon.com/gp/product/B000USRG90/ref=oh_details_o00_s00_i00?ie=UTF8&psc=1
I put them on at sunset or sometimes earlier by as much as an hour. I also went back to taking 2.5 mg sublingual melatonin several hours after putting on the glasses and hoping for the best. (According to one of Dr. Meirele (sp?) videos people with ME/CFS produce little or no melatonin.)
Overall, after a week of this regimen, I am sleeping better but still have the shift change--falling asleep between 2-4 am and sleeping until around noon. This is a huge improvement in sleep quantity and quality. Full disclosure: I was just up for 29 hours straight...but when I finally slept it was for a straight 10 hours. I could have easily gone straight back to bed and done another marathon sleep session, but I'm fighting sleepiness to stay awake and out of bed at least until sundown hoping that will help move my clock to a more normal-people schedule.
Regarding the question about valerian dose, I was taking 300 mg/night.

 

[Beyond]

Hey

Earthing has almost corrected my cyrcadian rhytm. Example: yesterday night went to sleep at 11:30 PM, fell asleep at 0:30 AM, and woke up at 7:30 AM. Most of days its like this, getting to sleep around midnight and waking up early with sunrise because its summer and I need to sleep with the window open. So now the problem its waking up too early. I still feel like shit, sleep its unrefreshing as always and makes me fugly with haggardness, but since now I DONT have problems with my cyrcadian rhythm, I felt obligued to report you guys about this.

I use the GIO earthing bracelet. I also take 5 mgs of melatonin, but note that in the past it never worked. Now I will need a way to extend my sleep hours, will try to fall asleep at 11:00 PM or earlier today and see... sleeping masks are uncomfortable and they slip off. Sunrise! You are my damnation now! I feel like always something pops up, when I manage to fix one thing, another appears to make sure I am having a nightmarish life.

 

[EnduringAngel]

Do you feel you have any problems breathing at night? may be worth looking into nasal resistance and using something like a nosovent.

 

[Beyond]

Do you feel you have any problems breathing at night? may be worth looking into nasal resistance and using something like a nosovent.

I will try to get a sleep study done when that appointment with the neurologist (in september!!!) or the other doc (probably earlier) happens, but here in Spain and my city doctors are very crappy and most of the time downright useless. Sometimes they go "Beyond" that and manage to actually worsen your condition. So I will need to convince them to give me a sleep study, and they will be trying to push me a psych drug or specialist. I have been to around 15 doctors and I am speaking from experince.

I have actually started feeling better since using the GIO, because getting to sleep late made me feel even worse than now, but still need to get a bit more of hours of sleep then 7 to enter a bearable region of being. Translation: a tough fight for some sleep that wont be over easily. A demon of Un-Rest have been haunting me for some years and doesnt want to find another host.

 

[soxfan]

I sleep so good but wake up with a pressure fatigue behind my eyes. It is almost like I just need to close my eyes because it is difficult to keep them Open. It isn't a drowsiness but a strange tiredness just in my head. It doesn't seem to matter how much I sleep because it is still un refreshing...I am in a period of actually sleeping great in terms of falling asleep and staying asleep.

My husband works nights so is sleeping during the day and we had to buy a light blocking shade for our bedroom bay window..it was expensive but well worth it for him. He also has a great sleep mask he bought at brook stone that contours to his face. I personally can't stand wearing them but he loves it.

I had the sleep study done recently and since there were so signs of apnea or RLS they told me there isn't much to be done except try different meds...been there..done that. Nothing gives me re freshong sleep..

 

[Beyond]

soxfan My obvious way to know if I have slept bad (like most of days) its having a haggard, uglier face. Basically I get the same circles under the eyes than someone 30-35 years older than me (like my father). I am only 22. I also feel awful in general, no motivation and depression, fear of people and responsabilities, slower thinking, head pressure/headaches, fatigue etc. I know most of these are because of unrefreshing sleep because some days I sleep better and they improve. Bad sleep actually prematurely ages you, I have no doubt about it.

I have to try to stop melatonin... maybe that its worsening my sleep. I was doing better just some days ago with earthing alone

 

[soxfan]

I don't like melatonin at all. I always wake up feeling like I still should be in one of the sleep cycles and can't really wake up. Even though I have really low melatonin levels and the doc would like me to take only 1mg I just can't do it.

My husband can always tell when I have had really bad sleep because I look pale...I just have no idea how to correct this problem. I actually took Ativan last night to sleep (0.75) and got up today feeling a little better. Maybe I will stick to that for a few nights and see how it goes...

 

[MNC]

Yes, I have my circadian rhythm problems under control due to light therapy and darkness therapy. Prior to that I was on a 25 hour schedule (Non-24 Sleep-Wake Disorder). I wrote a website about it at In Search of Mornings. I originally started with light therapy, got onto a 24 hour pattern, but was still falling asleep later than I'd like, which meant that the N24 had mellowed into DSPS (Delayed Sleep Phase Disorder). Then I discovered darkness therapy, which is a way of getting your body to produce its own melatonin by blocking out blue light in the evenings. (Taking melatonin tablets never did a thing for me, probably because I was still exposed to blue light in the evenings.) Blue light is the wavelength which tells your body it's daytime, and which suppresses melatonin production, so darkness therapy involves filtering out the blue light by means of orange tinted glasses and/or lightbulbs. These days, I use darkness therapy every night, and light therapy once in a while if I'm having temporary problems with my sleep pattern.

I would absolutely not recommend the method of going to sleep three hours later every day. It rarely works, and instead it usually makes things worse. I was on the Nite-Owl list for a while, and believe me, most people there have tried it. Many of them report that this method is what turned their DSPS into N24. Plus I think there's some decent research into it by now.

That is exactly what happened to me with that "therapy". I had DSPS since my teens, I could never sleep before 3-4 a.m. and I was wasted. In my 30's some doctor told me to sleep 2 hours later every night to reset the clock, and then I got this non-24h ever since (15 years or more of pure hell). My CFS is related to this non-24 disorder. Before this, when I "only" had anxiety, insomnia and DSPS, I was still decently healthy and functional if I could sleep until noon. I was going to afternoon classes, afternoon sports, partying by night like anyone else, etc. I mean I was certainly ill and handicapped due to this nervous disorder, severe anxiety, nightmares and panics while sleeping, etc. When I did the 2-hours-per night delay my brain and body broke down completely and then it's when CFS came, meaning to be extremely ill as if my immune system was gone and I had every illness on Earth. My mental health is also absolutely related to the sleeping hours. When I sleep fine on the right hours for a few days, most of my "mental and nervous" problems go away by themselves, just by sleeping right. So we have to be very careful with what doctors say and the diagnosis they give us on our nerves and mental health.

I spoke to some sleep specialists in the best sleep centers in the world and all of them say that many people with non-24h got it after trying this 2-hours-per day delay therapy. It is very, very dangerous.